Saturday, December 5, 2015

Bye bye, right eye

I am... more than a little bit disappointed.  Well, I guess disappointed isn't the right word.

I feel mislead.

I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses.  Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.

As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.

The first I wrote about a few weeks ago; my feet went numb again.  This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom.  Usually, that is brought on by water retention and compressed nerves due to weight gain.  I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness.  Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else.  VERY weird.  Like, touch your arm just below your wrist and imagine you are feeling it at your elbow.  Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.

Well, now I have had another serious symptom.  I can't see out of my right eye.

Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful.  Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently.  But by the time I got home, it seemed to be relatively normal.  I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.

This time, there is no pain.  I have a headache daily because of my pregnancy and it feels different from my typical tension headache.  This one is more likely hormonal or dehydration, which I try to battle as much as I can.  Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it.  So, for the most part, I am thankful that this one has no pain.

Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right.  I think I took my glasses off at least five times to clean them, to no avail.  I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right.  I went to my pregnancy class and thought, "well, maybe it's the lighting in here."  I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.

Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right.  I turn to my right to get tissue and my earplug.  Nope... all fuzzy.  I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head.  If I had any other job, I would have stayed home.  Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.'  After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.

This sucks.  This SUCKS.  If you were to draw a square, the entire left/bottom quarter is essentially missing.  In one eye alone, this isn't the worst thing in the world.  But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting.  When things move in this area of my vision, it looks like static.  My eye is working okay, it's my brain that's all screwed up!

I can't do the usual steroid treatment because I am pregnant.  I feel so helpless.  Like, what should I do?  What will happen?  It seems to be getting darker.  I don't know if it's getting bigger.  I don't know how long it will take to get better.  Thank God I am left-eye dominant and look into people's ears on the opposite side.  This is just ... unfair and ridiculous.  I feel lied to, mislead, and angry.  I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system!  Why have you not calmed down yet??!!

Oy.
MSloan


Chat MS - 11/30/2015

This last Chat MS was all about MS research, a topic dear to my little science heart!  Please don't hesitate to copy/paste to your own blog to keep the conversation going!

Q1 – Do you keep up to date with latest news and research articles?

I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments.  I do of course read the ones that get distributed by the National MS Society.

Q2 – What is your “go to” place for the latest in information?

National MS Society and, believe it or not, Twitter.  Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters.  I recommend it to anyone looking for regular answers and a real community.

Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?

Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me.  However, my dad hears things all the time and is really excited about them for me.  He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month.  My dad doesn't talk to me on the phone.  So yeah, he thought it was a pretty big deal!

Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?

ABSO-FREAKING-LUTELY.  I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder.  I enrolled just after my diagnosis.  It is SO important to participate in research, even if it isn't a clinical trial.

Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?

This is the sad reality of science.  Single studies are not enough to effect real change.  Some studies look great on the surface, but repeat studies do not find the same thing.  There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.

Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?

I think this is excellent!  But right now - - I am a bit skeptical.  I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.

Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms? 

Both of course!  Stopped progression is incredibly important to me.  More research on medications and the JC virus.  More research on effective medications that don't cause OTHER problems.

Q8 – Do you think we will see a cure in the next 10 years?

.... realistically?
No.  I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses.  Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.'  There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing?  Or is it because of the medication?  This is why MS is so hard to pinpoint.

Thanks for reading, all!  MSloan

Thursday, November 26, 2015

Chat MS - 11/23/2015

This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.

Remember to keep the conversation going and have a great Thanksgiving -

Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?

 Absolutely.  I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.

Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)

This biggest thing is that I have MS at all.  People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.'  This goes especially with my coworkers and bosses, because having MS makes me an ADA risk.  I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant.  I have not missed a day of work because of my MS in over 18 months.

I also struggle with telling people that I'm with about the possibility of my fatiguing quickly.  I have a relatively svelte figure, am tall and thin, and otherwise look healthy.  When I mention that I'm too tired to do something, I get a lot of eye rolls.  I look good on the outside, but on the inside, I'm struggling to stay alert.  This is really a hard thing to feel good about.

Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?

7 or 8.  I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.

Q4 – Are there situations or places you purposely avoid because of your anxiety?

Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it.  This happens a lot.  It's the most common issue I struggle with when I'm not having an active flare up.  I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue.  Pain free.  I miss those times.

Q5 – Have you discussed social anxiety with your neuro? What did they say?

Nah - it never really came up and I doubt he can do anything about it.  Unfortunately social anxiety is not like GAD and isn't really affected by medication.

Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?  

Abso-freaking-lutely.  All the time.  I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help.  I have this dream a lot, and it makes me think about it all day long.  I worry about my ability to get around.  I worry I will have a flare that affects my hands and I won't be able to work.  I worry I will be out with friends and will have to stop before they're ready to.

Q7 - What do you feel when you experience social anxiety?

I get quiet and I don't want to talk to anyone at all.  I'm not an easy crier but it makes me feel like I am about to flood the room.  My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.

Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?

The best thing is to spend time with people who are willing to ask questions.  Tell people you don't feel well.  But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.

Love to all - MSloan

Monday, November 16, 2015

Chat MS - 11/16/2015

Hey all!

I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway!  Feel free to copy/paste the questions to put up on your blog.  Remember to keep the conversation going!

I'll put in a few rudimentary answers where I can, but again, I don't drink.  Love to all!

Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?

I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)

Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?

It's odd, but I have!  Just as small as a dose of Nyquil and my whole body feels funny.  So I bet it's good that I don't drink otherwise :) 

Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?

DMD means 'disease modifying drug.'  I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.

Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?

Not even close - my first question was "can I still fly to my job interview next week?"  The answer was no - it was a busy month and my life was very much disrupted!

Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does. 

No comment here

Q6 - Have you found any benefits to drinking moderately when you have MS?

No comment here

Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?  

Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.

Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.

I have never heard this, how interesting!  My husband laughed his butt off when I told him this and showed him the attached article.  I have heard good things about marijuana tinctures and MS but have not explored it myself.  At least, not yet!!

Love all! - MSloan

Monday, November 9, 2015

Chat MS - 11/09/2015

This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance!  Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.

I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this.  I will do the best I can to stay relevant with these answers!

Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?

I was fortunate in that it didn't give me weight gain, at least not a noticeable amount.  Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.

Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?

What kept me from being active the most was not fatigue, though that definitely played a part.  When I exercised, my numbness got worse.  I couldn't feel my legs - at all.  I felt very unstable.  It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.

Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?  

Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste.  Yuck!

Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?

No comment here -

Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?

I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms.  My MS hugs were nauseating and debilitating.  They would come in waves throughout the day.  I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.'  I had odd lower-right pain that felt like an ovarian cyst - but no cyst.  It was very painful.  Appendix was fine.  Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins.  Who knew?

Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?

I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided.  It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch.  You can end up giving yourself a problem you don't already have, so be careful!  But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.

Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?

My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with.  Your body is trying to heal.  If your body gains weight after steroid treatment, the swelling will go down.  Don't panic, and definitely don't overwork yourself.  Save your spoons, so to speak, and listen to what your body says!

That's all, folks!  Love to all -
MSloan



Saturday, October 31, 2015

Baby Blanket

I started a baby blanket last night!  Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down!  I had just enough energy to take my prenatal and crawl into bed.

Where I proceeded to lie awake for several hours.  AUGH!  I can't be alone in this.  I feel like a Nirvana lyric.

I did, however, 'wake up' this morning and went for a walk to the local donut shop.  Cake donut with sprinkles - mm!  I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day.  I have never been successful at putting on weight when I want to.  Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.

My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery!  I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet.  It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again.  Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!

Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.

Enough for now, back to crocheting and watching "Moonrise Kingdom."  I love Wes Anderson movies, don't you?  Over and out -

MSloan

Thursday, October 29, 2015

Feeling Low

Sometimes I feel like I'm climbing a mountain with no summit and no oxygen.  I keep climbing and climbing, but I just can't get there.  I am frozen with cold.  I can't feel my feet.  I can't feel my fingers.  But I keep climbing anyway.

What am I doing this for?

Looking in the mirror lately is just that much more difficult.  I'm breaking out and the acne won't stop.  My hair is a disaster.  I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now.  I am not gaining enough weight, which is stressing me out.  The stress makes my MS worse.  That stresses me out even more.  So I don't eat, because I'm stressed, and have no appetite.  So I'm not gaining enough weight.  Which stresses me out.

Forget the mountain.  I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.

I asked him to do a single thing, load the dishwasher, three days ago.  He keeps telling me how tired he is.  I am trying not to be insulted.  But then he mentions it again.  Talks about it when he's home from work.  Complains when he gets up in the morning.  "I'm tired."  I'm sorry you're tired.  I'm pregnant and have MS, work full time, and then have to take care of this house when I come home.  You stayed home for 2 days this week and cleaned not a single inch of this apartment.  We BOTH live here.  Why is it only my job?  I don't complain about being tired any more.  I have been tired since February 2014.  I've been exhausted beyond belief for the last three months.  I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off.  Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.

So you're tired?  Climb the damn mountain.  You'll know the real meaning of exhaustion then, too.

Sorry.  I know he's doing his best.  I can't fault him for everything.  But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them.  I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone.  AGAIN.  To clean and take care of the house.  AGAIN.  How the hell can I start nesting if you won't help me?  I can't keep up.

I'm tired.

MSloan